7 – First week of treatment

The Fleury family (like many) prides itself on being right.  When the kids were younger, Suzy made red challenge flags like the NFL and placed them strategically around the house.  If someone said something the rest of us doubted, up went the flags and off we went to the desktop computer to look it up (was there even Google back then?).  Suzy said to me the other day, unprovoked I might add, that I have been right like 5 times in the past week (this being despite me being forgetful and unfocused, I can still manage to be right, not once, but 5 times!).  You can draw your own conclusion, but I think the stress is getting to Suzy too.

I started the blog with a quote from the Hamilton show – “Look around, look around, at how lucky we are to be alive right now”.  Now it’s – “Look around, look around, at how lucky I am to be getting treatment right now.”

I transitioned from planning to treatment very quickly.  On Tuesday, the 3^rd, I met with the Medical Oncologist about chemotherapy, and on Thursday I was getting a chemo port implanted.  It is obvious to me that once you have cancer, “you have to leave behind the world you know…”

Getting a chemo port is a good thing, although a weird thing to have implanted in your body.  The port makes it easier to complete chemo and fluid infusions, as well as blood withdrawals. No more IVs or lab test pokes.  Basically, a port is a plastic thing placed under the skin near my arm pit, with a catheter going into a vein near the base of my neck and another going into my heart.  The interesting part of the procedure is they didn’t put me under anesthesia, just a local anesthetic and fentanyl.  They draped my head and part of my chest with a sterile cloth, leaving the anesthetist with a view of my face.  We could talk and she could see if I was uncomfortable. She started out with a dose of fentanyl to make me drowsy but just kind of stoned.  If I winced, she would give me a bit more.  I guess I understand how junkies like it.  You get euphoric, a bit out of it, and everything is pain free.  I could hear them talk, but didn’t even care about the incisions and other things they were doing.

Mayo has every kind of support service imaginable.  Suzy and I attended a zoom support group with a guest speaker and author who had the same cancer and treatment as me about 7 years ago.  She seemed perfectly normal, whatever that means.  Her main long-term effect was a lack of active salivary glands, meaning that she was never without water and gum to try to keep her mouth moist.  I hope to be that lucky!

We met with a dietician who will be monitoring my weight.  Beginning somewhere in the middle of my treatments, it’ll become very difficult to eat due to the temporary damage to my mouth, tongue, and throat caused by the radiation and the chemo.  (A friend has helped us stock our freezer with soup for when I need it.)  Mayo really wants to keep your weight up, not letting you drop more than 10% of your weight.  Many of you know how stubborn I can be, and I’m counting on that being to my advantage.

I decided to get a medical marijuana card, so I can see if it can reduce potential nausea, take the edge of pain, and help me sleep.  Back in the day, you just smoked it.  Now there is smokable, oils, edibles, vaporizers, and a host of choices.  The doctor gave me specific things to try, knowing what symptoms I’ll be having. One store has over 200 different products.  It’s an odd industry.

My radiation and chemo began Monday the 9^th and so far are scheduled until Christmas Eve.  What a fantastic way to celebrate Christmas and my dream of being cancer-free in 2021.  “I’m a little nervous, but I can’t show it.” (You really have to watch Hamilton if you haven’t!)  Well, I can show it, but I need to stay in the present.  Just have to take it day-by-day.

Radiation is a pretty weird device and process.  I was on a long table, that can spin either way by 90 degrees.  There is a large machine that contains the radiation equipment, about the size that would fit in a car trunk, and a track that allows it to move 180 degrees, from the ground to the ceiling to the end of the table.  They lock you onto the table with your customized Kevlar mask, and start up the program.  The equipment moved around 5 times, and so did the table that I was on, to deliver 2 minutes of radiation each time.  Sometimes I was just lying there seemingly in position.  It turns out there is a single “beam” that serves 4 proton radiation rooms, going in bursts from person to person.  I think I was waiting as often as I was receiving radiation.  The odd thing is that you don’t really hear much of anything from the beam and feel nothing at all. The machine had to be rebooted while I was lying there in the mask, perhaps a 20-minute delay.  All told it took over in an hour or so.  I did enjoy lying there realizing that the cancer cells were getting killed at that very moment, and are still dying even as I type.  Die cancer cells, die!  Plus, they play whatever music you want. 

Here are couple places to go look if you are so inclined:

Radiation mask – the second one, not the decorated one

Proton Bean Radiation Explained

What to expect

On to chemotherapy Monday afternoon.  We arrived about 2PM, and were escorted to the room with a comfy chair for me, a reasonably uncomfortable chair for Suzy and some hospital equipment.  I get two chemotherapy drugs – taxol and carboplatin.  One drips into my port for thirty minutes and another for an hour, so if you figure some setup, some change over time, maybe 2 hours total.  Before the chemo drugs, they also gave me three drugs that turn off receptors that make you nauseous and other side effects.  As I have said, I’m totally worried about the chemotherapy drugs.  The main short-term side effects will be digestive tract issues, nausea, fatigue, blood cell issues, and mouth sores.  It can also cause short term memory issues (uh-oh), so it looks like Suzy won’t be telling how many times I have been right again.  The major long-term side effect seems to be neuropathy in both your feet and hands (think golf excuse).  I’m not sure what I was expecting to feel after the first day, but I actually felt OK.  Tired because of the long day at Mayo, but none of the nausea or other side effects we were worried about.

Day two of radiation is later today.  I’ll be thinking of all the wonderful support that friends, family, and even strangers have given as I try to relax.